Diagnosing Autism Spectrum Disorder

Parents are usually the first to notice the early signs or “red flags” of autism spectrum disorder. Maybe it was something different they noticed about their child at birthday party, or the child not developing like a sibling. What was the experience that led you to seek professional advice for your child?

How did you feel when you or your child received an autism diagnosis? What were your initial steps? What advice would you share with someone who has been recently diagnosed?

For us, we KNEW something was wrong from day 1. And we fought and fought to get the doctors to see what we saw in our son. We got all the same crap, “He is a late bloomer”, “All kids develop differently”, “He will be fine.” Finally 3 years ago tomorrow we received his diagnosis…and this was after a year of treating him for ADHD, ODD, OCD, and even had one doctor tell me my son was a “Paranoid Schizophrenic.” He missed out on early intervention, because of the late diagnosis, but we with the therapies he is receiving now, he is doing wonderfully. When we finally got the diagnosis, we were relieved, yet devastated. I mean, someone FINALLY saw what we saw, but at the same time, it was like a knife to the heart, because at that time we realized that this could make his life very difficult, even impossible in some aspects. My advice for newly diagnosed families is to always make sure you have a support system, someone who will be there to back you up with all the tough decisions you have to make, someone to let you cry on their shoulder when the world seems like it’s going to end, and someone who will share in the joys of the little things, like trying a new food without a fight, and will relish the major things, like a non-verbal autie saying “Mommy” for the first time. Take time for you, because YOU are what holds their little world together.

I felt shellshocked. Everyone looks at autism in such a bad light. I started researching it. My son was diagnosised with Aspergers. The more I read about it the more things clicked into place. Now I could at least tackle the problem. I understood why he didn’t look at people and why he paced. I contacted the autism society in my area and got good advice from other people. I changed his diet in small ways. Limited his suagr. Challenged him to try new things is always fun even now a days. It still chokes me up when I talk to other parents of aspie kids and we have so much in common. There are people who know how you feel about your amazing and wonderous child.

A diagnosis has been a long time coming for my son. He’s nine now, but entered a special needs preschool at 2 years 9 months for a severe speech delay. I had often insisted (and was ignored) that my son had more underlying issues than the ‘specific learning disorder’ label applied to him by the school. I didn’t know what it could be, because my son is a high-functioning autistic. It wasn’t until I worked with a more severely affected autistic child that I realized the similarities between my son and this boy. Then I went through my memories and his baby book and realized that he fit the ‘PPD-NOS’ category to a ‘T.’ We’ve since realized that my husband is also an undiagnosed aspie who had a difficult time socially throughout childhood. Earlier diagnosis could have saved him a load of heartache, which we hope to spare our son.

I actually felt my son was “special” when he was born. Call it motherly instincts, or perhaps inspiration but I really felt strongly that my son was put on this earth for a special reason. As soon as he was old enough to crawl and grab objects, we noticed that he was developing differently than his older sister, but just thought maybe because he was a boy that he would be a little slower than her. She has always developmentally ahead in every milestone so it was difficult for me at times to try to figure out why he was so much slower. And then he was behind the “average” milestones with almost everything. And we started noticing how he was playing.. how he would play with one toy for hours by himself. Didn’t really seem to be bothered by playing alone, in fact at times he would sing and talk to himself. It was like he was in his own little world. And then he started lining up objects in straight lines, sorting colors, stacking blocks perfectly straight and if even one was shifted just a slight bit to one side or the other he would throw a fit, watching a toy cars wheels spin…then came the diagnosis of speech and developmentally delayed. So at 18 months, we decided to have him tested through the local early intervention office. They said he was within normal ranges with everything but self help. (getting dressed by himself, using a spoon to eat with, etc…) We tried working with him but the older he got, the worse his tantrums got. I noticed his behavior was getting worse, and kept noticing other signs listed on the autism speaks website of a child with possible ASD disorder. So at age 3, we took him for a speech and therapy evaulation at a local children’s hospital physical therapy office. And there they were, our angels! These particular occupational and speech therapists were so in tune and recognized his little subtle behaviors and tendencies right off the bat! Through them and all their hard work (and of course my perseverance to keep pushing him to get tested) we were finally able to get him formally tested through the school district and at nearly 3 1/2 (almost 2 years after I started the testing) we finally got him officially diagnosed with ASD. I am not sure to this day, which exact part of the spectrum he is in yet (although we have a high suspicion of aspergers’) but I’m sure in time it will come. And really, it doesn’t matter to me. I will still love him with all my heart, and it is such a relief to know that he will be able to get the help and therapy he needs to succeed in school and life! I would say as a newly diagnosed mom who has a child with autism to be open to suggestions, be willing to follow through on your part to help support and get the help your child needs and most importantly that you are not alone! There are so many support groups out there now and so much information to just learn as much as you can and don’t ever stop! And of course thank god every day because you have one of this most choicest spirits in your life :)

When my son was 3 and my daughter was 4, he “interviewed” at her Montessori school. After working with him for 30 minutes, they kindly took me aside and suggested that I have him evaluated, as they didn’t think he was teachable in a Montessori environment. They also gently suggested I take my daughter as well. I was a stay at home mommy, and not sure I could afford this, but did it anyway. I thought maybe my son had a hearing problem, and my daughter might have ADHD.

I had known for a couple of years that my kids were different from my friends’ kids. I had been told they were undisciplined, wild, poorly behaved, etc. I had also been made strongly to feel that this was due to my inept parenting. But happily I took the advice, and went to the Child Study Center in Fort Worth. Three months after making the appointment, I went in a parent of two “bad” kids. I came out the parent of two kids on the autism spectrum that same day, after eight hours of testing. My son tested as moderately autistic, and my daughter was diagnosed with Asperger’s, Oppositional Defiant Disorder, and ADHD.

After they were diagnosed, I had no idea what to do next, but I followed the advice of the kind doctor at the Child Study Center. Her advice was to contact the public school immediately, and begin to educate myself about autism. I read everything I could get my hands on, even though it was frightening at times.

After my son started school, that fall, I began to pick his teacher’s brain. Over the last 13 years, since they were diagnosed, I have educated myself as much as possible about autism and special education. I believe this is the key to success, because if you don’t know what is out there, how can you get it for your child?

Today I am a teacher in a public junior high. I run a program for HFA and Aspies. The goal of the program is to monitor and support the students, give social skills training, and keep them in the general education classroom. Parents come to me daily for advice, and I happily help all I can. I love my job!!

My son just finished his freshman year of high school. He is in the same programthat I run but on his campus. He needs very little intervention, and functions well in the gen ed environment. He loves theater and was involved in three shows this year. He also had his very first birthday party this year, which was thrown by his theater friends. He went from being a kid with no friends to having dozens!

My daughter will be a senior this year. She is an honor student, and has not been in special education since junior high. She doesn’t have many friends, but has lots of acquaintances. She is very involved in Choir, book club, and science olympiad at her school.

I have 3 children all born with autistic tendancies. My 8 yr old was diagnosed on the austism scale but not given a full diagnosis. My 6 yr old was just diagnosed with Aspergers and ADD. We had significant issues this year in Kindergarten. Do you see your children going to college and being able to survive on their own?

My grandson was about 14 months when, I noticed that he would focus on the lights and would turn the light switch off and on and would not stop. He also stopped talking and had a blank stare like if something happened to him. I told my daughter that she should have him checked because I thought he could have Autism. She already had a child with severe cerebral palsy, she could not speak,walk,visually impaired and feed through a G-Tube. She did not want to have her son diagnosed with Autism. It took her four months before she had him diagnosed and he was diagnosed with High Functioning Autism at 18 months. It has been difficult for her and I am not allowed to help her because my Son-in-Law after my grandson was now about two and half years he felt that I did not need to help my daughter with my grandchildren. It has been a difficult road since I have read many books on Autism so that I could help them with my grandson and help with food issues that he had.

My grandson is now five-half years and I am not allowed to visit him at home. I can meet my daughter somewhere so I can see my grandchildren and spend some time with them. It has been really a difficult time because both my grandchildren have special needs. I love them very much but, I would like to help both my grandchildren. My grandson needs to be able to have the attention he needs for him. My granddaughter is in a wheelchair, can’t walk, can’t talk, visually impaired, has seizures and many other complications so my daughter needs my help since she is the only one that works now. Every nurse that has come to take care of my granddaughter have been quite bad. They have no compassion and just treat her like a number. They don’t care about her like I do, they get lost in their reports and forget about how my granddaughter feels.

I would appreciate any help or advice you have so I can help my grandchildren. I grandson loves the water, and I would love to get him some swimming lessons because if he sees any water he wants to climb in or dive in and I am concerned that something might happen to him.

I’ve always known my son was different, since he was a very small baby. He developed differently, he hit his milestones in different’ orders, did the strangest things with his toys, didn’t do things that normal babies do (chew on things, play with his feet, eat anything he found on the floor, etc). I understand that not ALL babies do all of those things, but it’s just something I can’t explain. I felt it in my gut when I watched him grow that something wasn’t right. He had a lot of problems also with food sensitivity (still does) and bowel problems (still does), as well. When his EHS teacher brought up Autism around the time he was 1 year old, I got defensive. I thought, “No way. My cousin is Autistic (adopted), and he acts NOTHING like her! It has to be something else”. So again I voiced concerns with his pediatrician (I’ve been since he was a few week old), and she said not to take to heart what they say because they are not qualified to make observations like that, and that I worry too much and boys are slower than girls, blah blah. Well, his EHS teacher also had a background of working with children with Autism, so I didn’t dismiss her entirely. I started researching, and found that he did indeed fit almost every symptom. I was devastated, and yet, I felt validated because I then knew that I wasn’t an idiot! There really could be something wrong! So I got him a special instructions teacher and a speech therapist (that’s all the help that’s available from birth to 3 where I’m at), and I confronted his pediatrician again. She said the same thing that she’s been saying. So, after fighting for a year, I finally had all of his helpers send reports to her, and she finally agreed to send a referral to a pediatric neurodevelopmental specialist. At age 2 1/2, my son was finally diagnosed with ASD. He is on the severe end of the spectrum. Since I have known for a year and a half prior, I was not surprised. I was happy because this diagnosis opened up so many more opportunities for us to get help for him. Sadly, I came to find that we have no ABA therapy here. Really, there isn’t much of ANYTHING here. But still, I could help him! He’s come a long way in this past year. He can now talk, most of it is echolalia, but he’s learning how to communicate! He is almost completely potty trained, and does well in preschool (apart from interacting with peers.). My advice would be: If you think there is something not right, fight as hard as you can to have your child seen! Even if they may not be Autistic, it certainly doesn’t hurt to rule it out! After find out, if you haven’t known already, grieve and heal. You don’t have to jump on the bandwagon right away. Process, research, mourn if you have to ( I hear some do). It will get better! Soon, the abnormal will become normal, you’ll change your life as well as your child’s, and you wouldn’t want it any other way!

I always had strange behaviors but academically,I was on the same level as my peers. I thought there was nothing wrong with me.My older brother was an extremely slow learner and was in special ed all his life so since I wasnt retarded, i thought I was normal and when i got to adulthood,I would go off to college,get married and have kids like everyone else. None of that happened. I have always wanted to stay a kid,and not grow up.I have never even had a real boyfriend.I dont know if I could even handle a marriage because I am afraid I would always be getting irritated with my husband since I would have to live with him.I know this because I have had to live with my dad all of my life and he is always irritating me.I am on the level of a teenager and teens are often very rebellious with their parents. I was diagnosed when i was in my early 20’s with PDD,but I think it is aspergers.I have alot of the signs. Now I am able to get the help I need.

My son was different but I had no idea initially. I was 39 when I had Matthew and he was and still in my only child. For me it was hard to figure out. I was always thinking he was odd at birthday parties and he was tempermental and was still in denial even when a few peopled called him Chuckie- you know the doll from the movie.

I blamed myself for all his behaviors. For years I just thought it was my fault. My husband left me when Matthew was 4 and I do believe it was because he was so different and hard. But him leaving is now a blessing because I can manage Matthew in an environment that works for us and his father can do an environment that works for them. He is a better more participating father when we co parent and I am a more relaxed mother.

Matthew was 8 and 3 months when we officially found out he had Autism. Our story is unique but perhaps it’s not – I think all the journeys are hard for everyone but if an Autistic child does not exhibit non verbal behavior then it’s obvious and help is there – it’s different when they talk and participate but have odd behaviors that can be blamed on age appropriate or maybe even parenting style. My son decided that school was something he did not want to attend anymore. There is a ton of speculation about why – what was trigger? But for me it was coming – I knew this day would come – and thought I was prepared – it was so much harder than I even imagined.

He has been truant from school for 6 months. We got him diagnosed at Dartmouth Hospital in Hanover NH. Wewent there more for Psychiatrist evaluation because our school told us he would not be allowed back into school without medication and maybe we should admit him to a psych ward. Those days were dark and they were scary – difficult times.

But Dartmouth told us Matthew had Autism – it was interesting because for years I knew something was different- I thought he was just really smart. My friend and neighbor brought me aside one day and asked if we could chat about Matthew – he was 4.5 years old – she has 6 kids – and I said sure and she said Kathy have you ever known that Matthew is different? And I said well people have told me other things but not different tell me more – it began a 5 year journey – and it’s finally in place.

He had sensory issues and he had OT at age 5 – and I always said when the school figures it out I will address it then – and they figured it out because of Matthew – he refused to go to school saying that I would die and not pick him up – it as awful – the way the school handled it was messy – they had no idea what to do with him…..for 3 years he was a great student then fell off cliff…

The signs were all there thought – he kept telling me he did not like certain things – I kept pushing him – he froze.

Dartmouth told us about he 100 kit from Autism Speaks and the 100 day plan. They told us what we needed to do and that was get him back to school – get an IEP, cognitive therapist , medication, and behavior analyst – it was a a strange day – they told us after 3 hours of testing that he was Autistic. We had so many questions – these doctors best in the country – they gave us information and told us to create action plan.

Since then I switched school districts to a bigger city school where the autism department is housed in the elementary school that matthew goes to . He has an excellent cognitive therapist -I was in touch with Easter Seals for that and still am – they have excellent resources for autistic families. We got his IEP we got a tutor to come to the home – he got all his testing at the school and tested out of second grade. We all worked together on a transitional plan to get him back to school for an hour and only preferred activities. He is medicated for his severe separation anxiety and at the school he has a behaviorist and a paraprofessional for the fall – he will only go back 3 full days .

I will not lie – it was a very emotional and difficult 6 months. I made many phone calls, and cried many tears. Everytime I got a test result back it just confirmed what was true – and I cried because I was still shocked at how long it took to get him the help he needed.

But when I revisited Dartmouth at the end of March they said again we had to follow the 100 day kit – make it happen and get action plan. I was exhausted and I was alone . My co parent did what he could but matthew could not manage to be away from me . He did not believe our son was Autistic it was easier to blame me ….it was sooo difficult.

Flash forward 100 days – everything is in place – the team is in place – it’s all working – and just last week I sat down and cried again when we finally got the IEP –

I am saying in the same sentence that I accept his diagnosis and yet in the next senence I am in denial – I am always confused that it’s real and always exhausted explaining my son and his behavior to other people and his lack of social interest.

But I am also so in love with him. He has taught me so much about what is important in life – he loves me so unconditionally that it makes my heart sad to know he will always be so unique and amazing. I feel blessed in so many ways. But there are always reminders of who he is – when he plays star wars legos and lines up all the men in perfect order and for hours can focus all alone on the base he is making and i watch him and I think – yes he is going to be somebody amazing someday – it’s hard but it’s rewarding and I thank god everyday for Austism Speaks , Face book, and blogging – it was my own personal survival guide. And now the co parent and I have come to terms with his diagnosis and we are working together to give him the best life we know – we are more committed to Matthew now than ever – so it all worked out – it’s all good –

A dear friend summed up my son like his – Kathy I listened to what you were saying about Matthew and Autism, and I heard it too – but until I witnessed him in action did I really truly understand – I will forever be grateful for those words because so many people have left me and matthew – they don’t want to be around us – and those who stay I love so much …..

I knew my son Jamey was autistic long before he was diagnosed. I noticed that he stopped talking, got really picky about what he ate, hand flapping, jumping, running his head into the couch and some other repetitive behavior. He was in his own little world most of the time, he was around 20 months old. We would call his name and it was like we weren’t even here. When he went for his 2yr check up his Dr. told me there were some red flags and referred us to Developmental Pathways for early intervention. That was in late May 2010, he was finally diagnosed on Set 24, 2010. When he was diagnosed I went through many emotions; anger, sadness, hopelessness and even some denial even though I knew he was autistic. Luckily we were able to receive services for him, Speech and Occupational Therapy, also an Early Childhood Specialist met with him at our home. Jamey also has Sensory Integration Disorder so he likes to run/jump a lot and he needs some compressions and benefits from wearing a weighted vest quite often. He is a very high functioning, funny, smart, affectionate little boy. Jamey turned 3 in March and started Preschool on his birthday, he rides the bus to and from school and he loves both school and his bus rides. Jamey exceeds any expectations I first had after he was diagnosed and he amazes me everyday! I have hope that he will continue to grow, learn and excel and live a happy life!

your story sounds so much like mine with my 3 yr old alexa when alexa gets excited about a tv show or a surprise gift she runs and jumps as well I will check with her dr. on our next appointment in july to see about a vest as well thank you for sharing

My son was born 15 weeks early (he is a twin – his sister does not have Autism). He started receiving Early Intervention from the moment he came home from the hospital (5 months in the NICU). He received OT, PT, Speech/Language, and Special Education. He received all these services right away because he was extremely premature and had developmental delays. When he was around 15 months old, he started flapping his hands up and down constantly. His speech was grossly delayed as was his social interactions. My daughter (his twin sister) was also developmentally delayed but started catching up at this point. I asked every single therapist that came into my door if my son was on the spectrum. I was always told no, that he had developmental delay due to extreme prematurity. When it was time for my son to attend pre-k and he had to be evaluated by the school, I asked them as well. Each one of the therapists and teachers told me ‘no, he has developmental delay due to extreme prematurity”. It wasn’t until a few months ago that his teacher started noticing additional signs that were new. It was at this point that the school asked me if they could screen him for Autism. He then saw a developmental pediatrician and was formally diagnosed about 2 weeks ago with PDD; along with gross developmental delay.

Even though we always knew it, sensed it, felt it, the news still hit us like a ton of bricks. It knocked the wind out of us for a moment. But, our son is still our son. The same little boy that went into the doctor’s office is the same little boy that came out of the doctor’s office. He has a diagnosis now. And quite frankly, we are relieved. He can continue to get the services he has been getting for developmental delay plus now he will received additional services to help with the behavioral aspects of Autism.

We know he will have a wonderful, productive, purposeful, loving life! And we can’t wait to go on this journey with him to help him reach all this goals!

Honestly, I noticed how unresponsive my son was from very early on. At every one of his well visits with his pediatrician, I asked if he should be screened for autism. The Dr. told me no, because he looks at him when he comes in the room. I would think yeah, for 10 seconds. He finally got early intervention at 1 year old for not using 2 hands together and fine motor issues. Even his Occupational therapist did not want to see autism, although it continued to nag at me all the time. We took him to a typical playgroup and left practically in tears when we saw just how different he was from the other children. He was on the older end of the group and barely doing what most of the younger kids were doing. He had a speech evaluation for early intervention, and that evaluator saw what I had been seeing, but through her professionally trained eyes. She gave me the M-CHAT questionnaire and talked to me. My son was only 16 months old, but it felt like I had been fighting with everyone I knew that there was something else wrong with him. Finally, someone was validating that! That was all I needed to grab the bull by the horns and take off running. I immediately made appointments and got him in with a pediatric neurologist where he was diagnosed with Autism. At first, even the neurologist didn’t see exactly why we were there, but after talking to me and observing my son, he realized what was going on. Now, he is 4 years old and his symptoms have come out much more. I feel that if I hadn’t had such strong feelings when he was so young, and he hadn’t been in intense intervention at that time, he may be much more severe. A lot of Dr.’s don’t even want to diagnose children at 16 months old, but he presented with enough symptoms to be diagnosed, and that makes me feel that he could have been worse if it had been untreated. Initially, when he was diagnosed, I felt relief. Finally an answer. Finally, some validation that I was not some overbearing, crazy mother. Then the grief slowly settled in. The terror of what would lay in our futures? In his future? I still don’t have all of these answers, and there are still days where I feel like I just found out and all I want to do is cry. There are things that will always hurt. Sometimes seeing how disabled he actually is, feels like a slap in the face. To me, he is my sweet little angel. And then I receive his annual progress note from the school and have his meeting and hear what they think. It stings, I’m not going to lie. Then there are the mom’s who you meet and want to have a playdate until they hear your children are autistic. All of a sudden its like you have a disease. Or the ignorant things people say to you when you are alone and they don’t know you have special needs children. That, my friends, is some of the best stuff I have heard yet. It can be a lonely, isolating life, being the parent of a child with autism, with little emotional support and no one to relate to. That is why I created the Facebook group I am affected by autism. Its a place where people who have autism in their lives (parents, family, people who are on the spectrum, etc.) can go and share triumphs and hardships. In the few months we have come together I have found it so helpful. Even helping me get through a very difficult family situation. So if you are a newly diagnosed family, my advice to you is to do your very best to find people who are going through what you are. Isolating is not the answer although it may seem to be the easiest thing. And the only other thing I can offer to any family going through a diagnosis is (((HUGS))). Its a difficult thing. Believe me, I certainly know.

I always knew my son was different, he was super smart and quirky even as a baby/toddler, but never would have thought it was autism. Early in school the teachers told me he had OCD or something else, and I was furious. How dare they “diagnose” my baby? Then I had him evaluated, and he had Asperger’s and ADHD. I still was so angry I didn’t want to believe it…all those doctors just want to put a label on the “different” kids, right? However, once the anger passed, and I learned to listen and do my research, I realized they were right and I had to change my way of thinking and learn to be his best advocate. Now I can’t imagine him any other way but how he is.

I first noticed my son was a bit different around 6 months of age. He has a twin brother, they were two months premature. One weighed 2 pounds 15 oz. The other 3 pounds 5 oz. My smaller son rarely made eye contact but was a very good baby. The other acted like a typical newborn. Around 6 months little one Evan started to stare at his hands in front of his face all the time. He also couldn’t stop looking at lights, fans, or anything that spun in circles. This is when the scratching and rashes started. Right after his 6 month shots. People told me that he would grow out of these things and that I was paranoid. He was also hospitalized two days after his shots for respiratory issues. We had him tested for allergies and the results were high peanuts, egg whites, dog dander and soy. Even after eliminating these things from his diet he would scratch at his face and pull his hair out. We finally had to shave his head. After his 12 month shots he developed a rash on his shoulders and back that came and went for two months. I was told that it was just a reaction to his vaccines. I changed pediatricians immediately. After that he wouldn’t go near his twin brother and was often violent towards him. They still never play with each other because his brother is now scared of him. At around 9 months is when he started spinning wheels. Any thing that went in circles he would spin for hours at a time. He also discovered the ceiling fan and couldn’t take his eyes off it. By the time he could walk at 18 months old all he would do was spin and got really into music. What music was playing didn’t matter. The bay news 9 weather song comes on and his attention is lost. After his most recent round of shots at 18 months is when it really got bad. He started throwing himself backwards, head banging, flapping, clawing at his face and body. He stopped saying the few words he knew now it’s all gibberish. I immediately asked his new pediatrician for an Autism screening. We now have him on a special diet that he hates and are spending countless money on food experiments. I am still trying to get a urine sample to send to the lab but the stupid plastic bag isn’t working. I’m pretty sure that I am going to spend tomorrow chasing around a naked baby with a cup. We aren’t even officially diagnosed yet but I am holding out for the blood, stool, and urine test to come back. I am hoping that just a diet change will help. My THREE therapists tell me that food alone does not cause all of his behavioral issues. Hopefully his weight belt, compressions and brushing will hold me over until I can figure out a treatment and diet that works for him. Oh yeah his 4 month old brother is already scratching at his face and has rashes on his body. He is now on a formula that costs$180.00 for 4 cans. I can’t even leave my house anymore without at least one person helping, especially with 3 boys under the age of two.

My 8 yo son was diagnosed with Aspergers about 9 months ago. I was given a list of syptoms and told to read a book. I live in rural Mississippi so there weren’t support groups in my area or resources in the library….his teacher and principal in the public school system didn’t even know what it was. About 6 months after his diagnosis someone told me about Austism Speaks and I ordered their 100 day packet. I tried to read through it but it was kind of hit and miss because I was still in reactive mode due to the fact that I had undertaken homeschooling for both of our children, and our youngest was about 15 months old. I finally found Transformations in Memphis which holds parent education classes each month. It’s about a 2 hour drive so the first one I could go to was just last week on Sensory Integration and it truly opened the floodgates. For the first time I knew what others were going through and what was available and the questions began like rain! You mean it, he could use therapy? What a concept! How do I get started? I’m finally on the road of education, becoming my childs advocate, and getting him what he needs. The best advice I can give is to find a support group! Talking in person allows for exchange of idea sand allows you to think about things you didn’t even know about. It’s hard to ask questions when you don’t even know where to start!

We just recently found out, but the process began late last year. The tantrums are what led me to seek help. Tantrums were out of frustration with objects, over things not being in rainbow color order, skipping a numbered isle in the grocery store, the trash can at school being to full for his plate to fit – anything it seemed would set him off again. I finally pulled him out of preschool because he was miserable. “What 3 year old hates school?” I wondered. I wanted to blame his teachers and the other kids. “He’s just too advanced for them” I thought. He was doing first grade math, already knew his shapes and numbers and colors and upper and lower case alphabet, he was brilliant…..so what if he can’t use a fork, ride a tricycle, or sing a simple song? What’s so important about knowing the other kid’s names at school, or wanting to play with them? Kid’s all develop at their own pace, right? Yes and no it seems…
Last December our Parents as Teachers Educator gave us a referral to get him evaluated for his tantrums. I was surprised at the interest they took in him. I’ll never forget the comment, “he’s fascinating”. Months of tests and evaluations, interviews, and observations later, we’ve received our PDD-NOS diagnosis. I took it better than I thought I would, my extended family not so well. They’re getting there. :)
I’m relieved that we finally have a tentative road map to follow in helping him. I’m relieved that the last four years of second-guessing my ability as a parent are over. I’m relieved that he’s healthy. I’m surprised at how much patience I can muster, now that I understand more. He’s done tremendously well with intervention thus far, and the help and support we’ve encountered are such a burden lifted. I also don’t mind this “label” people seem so concerned with. The benefits already out-weigh whatever negative assumptions might accompany a label. Thanks to a more educated and aware public, my hope is that in a few years “autism” will be no more a label than “asthma”. I’m glad we found out!

Our son went through a regression in the months just before he turned 2 yrs. We had just had a new baby so we chalked it up to the transition mixed with the terrible twos. As the year went on and his symptoms worsened, we went to a new pediatrician who is also a behavioral specialist and she immediately saw what we were seeing- the avoidance of eye contact, not responding to his name, lack of language, etc. She referred us to our local Regional Center and that took a funny turn. He was having an unusally good day the day we took him for his assessment. He took a nap, ate well and when the psychologists greeted him with toys and a plethora of bubbles, he actually engaged. He didn’t talk and his eye contact wasn’t great but he made more than he usually did. We initially were just given a diagnosis of developmental delay and were given some services, but not much. We invited our caseworker to our home to observe him in his natural environment and she saw what we see each day. She saw Matty lie on the ground and open and shut the screen door over an over again for almost 30 minutes. She saw him scream “no” when we needed to change his diaper and tantrum for 45 minutes before we could accomplish the job. She set us up with a more formal psychological exam and he was diagnosed on the spot with autism, just 3 weeks shy of his 3rd birthday. We also had him assessed with the local school district, and their criteria for diagnosis is far less than that of Regional Center and he was offered the full gammet of services too. We are just beyond our first 100 days and life is finally getting into a routine and as smooth as it can possibly get with an Autistic child in the house. I wasn’t afraid of the diagnosis, I embraced it because I knew that the day we got our diagnosis was the last bad day. It has only gotten better with services and therapies. Already my son’s language is coming back (one word at a time), he’s learning to express himself and ask for what he needs, even if he does so non-verbally, learning proper behaviors and to follow simple directions. It isn’t perfect, but in our eyes, this is as close to a miracle as we are going to get.

Columbia University is running a survey on this same subject – parents’ stories of recognizing autism in their children and obtaining a diagnosis. You might be interested in telling your story in this survey as well. Here’s the link: http://understandingautism.columbia.edu/.

My son was just recently diagnosed with Autism, he is 2 1/2 years old. I must admit that my husband and I were not surprised since we had noticed some atypical behavior very early on. It still hurt to have the diagnosis confirmed but once I had a good cry I realized that we finally know, and as they say, knowledge is power. We can finally move forward and take all the necessary steps to help our son grow and develop. And even though we may face challenges that are different or unique to our situation, what parent doesn’t face challenges on a daily basis? I look at this as an opportunity to learn and grow as a parent and a person. It also helps that we have a fantastic family doctor who supports us and knocked down the barriers for us, and a wonderful autism development program in our province which is completely funded by the government. A case worker just met with our son today and they really hit it off. I’m just so thankful that we know what we’re dealing with and as I mentioned before, we can move forward.

With our little one it was her doctor that noticed something may be a little off. He didn’t come out right and say it right away because she was barely turning 1, but he mentioned she has some autistic tendencies. We were told that we should get her diagnosed but I was hesitant because everyone we talked to say that children develop differently. It was after my wife’s dad mentioned that kids her age should be making eye contact that we seriously started looking into what Autism was. We waited, at my request, until she was two to have her diagnosed. We always knew in our hearts that she was on the spectrum, this was just to validate and start the process of getting her the help she needs. We are glad her pediatrician didn’t beat around the bush with what he saw, same with my father in law. Its the hard truth that will open your eyes. The quicker you can accept it the better off you will be. At least that was the case for us. At 2 1/2 she is in ABA therapy and making good progress already :)

My son who is now 26 graduated from college married with his own child….it took a long time to convince my pediatrician that he was having difficulty finally we were helped at Boston Children’s Hospital still was not diagnosed for awhile but began early intervention program at about 13 months….mainstreamed and only repeated kindergarten. All I can say… just keep plugging along and try not to medicate (this was recommended but I declined).I don’t know what was worse…..those that said there’s nothing wrong or those that said I should take him to an institution….Just love them and do your best…that’s all you can do

Thanks Autism Speaks for having a Live Facebook Chat for the Family Services 100 Day Toolkit discussion. This feature will raise awareness, comfort families and provide real-time communication over the social media realm.

I instinctively knew my daughter needed a different parenting style than a lot of other kids, but it was my sister who knew she needed to be evaluated. She suggested it when my daughter turned three. A year later we got the autism diagnosis and at first we were devastated, but years later we realize that the diagnosis didn’t mean our daughter would never have friends, do well in school, etc. Even if it did mean those things she would still be a great blessing, but it was confusing and scary at first. My advice, don’t be scared of a diagnosis. It’s the first step toward understanding what therapies will help.

My baby girl was my 4th and didnt meet any mile stones. She didnt babble, didnt crawl, didnt sit on her own and didnt start walking till she was 22 mths and was just so tired of hearing that all babies are different. Her peditrician would’nt test her till she was 2 yrs old and so she had an appointment on her 2nd birthday with them and Inland Regional (they are resources for children with disabilities). When given the diagnosis of Autism with Retardation, I was Ok cause at least I knew where to start. She was immediatley set up with home OT, PT, and a home school teacher. I also attended workshops and bought every book (LOL). But what I found with my baby girl I didnt agree with keeping everything the same, schedules, the way her room was set up because life is not set up on a schedule. It wasnt easy for anyone in our family including her but she learned to deal and how to deal with change and now Im proud to say she is mainstreamed in regular education and just was promoted to Jr. High School. She also takes dance classes and just signed up for volleyball. She still has her moments and is able to let me know when she needs a timeout or as we call it “ME TIME”. I am very much on early intervention.

After Christopher’s first birthday he was walking but the words never came. I waited for a couple of months and then ended up at a conference that showed video of kids before they were diagnosed and it was exactly like Christopher. I work in disabilities so I know the signs but he was more difficult because he didn’t quite fit the mold. I finally went through Early Intervention services and found out he had chronic fluid so we fixed that problem. The speech still did not come so we saw a developmental pediatrician and received the ASD diagnosis at 23 months (which is exceptionally early). In the meantime, I fired his primary pediatrician and changed to another one in the practice because of difference of opinions.

After the diagnosis we went full force with PECs and Signing Time Videos. He has learned to communicate some and is more interactive. We wonder at times if his diagnosis is correct but know we did the best thing for him going that route. it’s better to do something and be wrong about the diagnosis than it is to do nothing and wait. Early Intervention is the key to maximizing potential. Sometimes it takes getting that diagnosis to get the help you need.

Which kid? ;)
Our oldest was diagnosed with sensory issues and language delays at 2 1/2. He was dropped from his IEP at 6 because he was too smart and at that time his pediatrician started treating him for ADHD. Fast forward four years and we’re going nuts. We’ve had him in OT and social skills groups and nothing is working. The kid has ADHD with all the bells and whistles, or does he? Went to the school for an evaluation and, wouldn’t you know, we’ve been dealing with high functioning autism all this time.

I started to notice something was different around twenty monthes with my son. He was no longer my sociable chatterbox. My son had reached all of his milestones until that time. It was so hard to watch my son withdraw into himself, avoiding eye contact and no longer speaking. It was one of the hardest things to hear, that my son was Autistic. How could my little boy who was so happy, outgoing, and such a talker, not be able to talk anymore or look at me in the eyes.
That was five years ago. He is now seven and has made progress since then, but he is still considered mostly nonverbal. He does do eye contact now and has such an innocence within him. He is my precious son and love him with all my heart, but I wish I could have some insight on what made him this way.

I just read all these comments, but I am wondering why there are no posts on biomedical treatments? Were any of these kids tested with blood tests? Or only tested by observations? Were they all healthy? What about PANDAS or Thyroid problems? Were Lead poisoning or heavy metal poisoning ruled out? Do any of them have any auto-immune disorders? Did they try special diets? Is any of this in the 100 Day Toolkit? I’ll check that out next,
Sign me a concerned Grandma (two grandkids are on the biomedical path).

My daughter was tested for everything and we tried the Gluten free diet and a couple of others but none of them made a difference and since she had stopped eating anything unless it came out of her cup I didnt worry about it. I slowly introduced different foods as she progressed and now she pretty much eats everything … There are some textures she isnt crazy about but is willing to try it.

For us it was the daycare workers at our local Tech College where my husband and I worked. They said are you ready for this…have you noticed he doesn’t play right. Yeah I laughed what 18 month old doesn’t play right? We started with investigating there and finaly enough signs at the age of 3 pointed us to apraxia of speech & autism. Altough I always kinda knew the final shock of a Dr saying your son is autistic still makes me ill, and loose my breath…you know that kicked in the gut feeling. But now he is talking and catching up, so breath and forge ahead!

For me I realized my son was different at the age of one. He wasn’t making an attempt to say the small words that babies say. My family just thought I was crazy and told me that all children don’t develope at the same speed so I just let it go. At the age of 2 and again at 3 I took him to his pediatrician still concerned because he still wasn’t talking. I decided to take matters into my own hands changed his doctor and told him my concerns. The doc sent me to an ENT(ears nose & throat) specialist where they found nothing wrong. When he told me the results he then sent me to a neurologist and thats when my son was diagnosed with PDD-NOS at the age of 4. It was a lot to digest at first and trying to understand his wants and needs was the hardest part. Well my son is now a 13yr old very handsome young man. If I had the oppertunity to go back and he could be “normal” , I wouldnt do it. I love my son just the way he is. God blessed me with him for a reason. Every day is an adventure for us & if the rest of the world saw it as he did it would be a much better place. If you ask me he is the normal one in our household of 5. He has 2 younger sisters that love him dearly and even though he has autisim he’s still the protective big brother. My son is a blessing to have a joy to have.

If it hadn’t been for having my two girls first. I would have never known something as early as I did, was different about my son Jack!
Having a Baby Milestone Chart is the NUMBER ONE essential item for First time MOTHERS!
Keep it on your Fridge! Every month reffer to it. Check off Your baby’s progress.
Physical will most likely be on target.
Keep an eye on the social and verbal check points!!
If you baby is very behind in those areas be aware of it!!! Tell your Ped Dr your concerns!

Nathan was diagnosed this year right before he turnned 3. I thought he was fine just a little behind, he was my first boy ( my first son passed away). He was after the 2 girls, I was told boys are slower than girls, not to worry. It’s wasn’t until my second son was born that I realized nathan was really behind. However our family doctor knew he was different. With us going there frequently, he would try to interact with Nathan a lot, but with no success. It was Nathan 2yr old check that I was able to admit that Nathan is different, I told the dr that he doesn’t talk, lost sounds, wont look at me, he was a late walker, etc.. Our dr said, I was waiting for you to admit that help was needed. I love my family dr, he helped with everything but since he wasn’ t a specialist it took awhile to get things started. Nathan recieved these diagnosis: Apraxia of the speech, sensory intergration disorder, gros an fine moter delays, global developmental delay, an mild to moderate pervassive develpomental disorder. He has to be tested again when he turns 5. Who knows what the future will hold for him I know what i want to happen but trying to make that happen an keeping things equal with my other 2 typical kids, an my other 1 special needs daughter is hard.
Destiny is 10months older than Nathan, she wasn’t really behind she just couldn’t tolerate certain sounds. I had her tested because our dr was somewhat concerned about her. She has a diagnosis of sensory intergration disorder, an extremly high functioning aspergers, she is barely on the spectrum, the diagnosed her more for the help she can recieve rather than not being diagnosed. Destiny and Nathan are extremely different from each other, it is hard to cater to both of their needs at the same time, but i manage it. Cadence my oldest is awesome helping with the kids. Conner is my baby he is 18months, it is amazing what nathan has learned from conner. I thought that Destiny an Nathan would be more like twins, but it was more Conner an Nathan, but Conner has offically past Nathan up.
I would love to find more sources of help, but i keep hitting dead ends with me needing more money

My daughter wasn’t diagnosed until she was 12 yrs old..however, she was diagnosed with ADHD at 4yrs old then with Bipolar disorder when she was 6 yrs old..Other Dr’s suspected Autism but her Neurologist & psychologist kept saying they didn’t see it..we thought maybe there was some brain damage that wasn’t being picked up on the brain MRI. I was familiar with the spectrum so I beleived the Dr’s and thought she wasn’t autistic..her behaviors ever since she was 2 was rages(many and over & over again), lack of focus(though she could sit and watch movies, TV and play video ganes for hours), verbalization problems (she didn’t talk until she was 3 yrs old and then not many words), processing disorder (it took her a very long time to get the words out theough she knew what she wanted to say. She would get frustrated withproplr if they idn’t take the time to listen and still does), sensitivity Intergration disorder, she would also change her clothes at least 5 times in a day! If a drop of water got on her clothes she would freak out!! At first I thought it was becaseu she had many ear infections &had 2 sets of tubes, I figured it was jsut that she couldn’t hear and that’s why she didn’t talk much..what she could say was very hard to understand..I got ealry intervention, got her in speech, OT & PT therapies and in preschool when she was 2 yrs old. Withthe rages, I had a hard time being able to keep jer in sinve they wanted to expell her (that’s right..they wanted to expell my daughter at 2 & 3yrs old!!).. THere is bipolar disorder in my family so it is hard to figure out if the rages are form her sensitivity issues or mood swings(she has both)..it wasn’t until she was hospitalized 9 times in one year that I swithced psychiatrists and the Dr diagnosed her with Autism, PDD NOS.. I am now having a hard time with the new DR as she is diagnosing her as Intermittant Explosive Disorder (wich doesn’t fit if you look at allaspects)..and now my daughters SSD was denied due to it!! Ugghhh!!! I knwo most of you know the agony, the consatant battles you have to fight and the consitiant advocacy us parents have to endure! I am in a conatnt battle with the public schools, camps & daycare! ow that she is 14 yrs old it is extremely hard to find any daycare that willtake her!! can;t afford a nanny!! Hats off to all the parents that endure what I have to and more!!

I knew something was different about my son from day one…..everyone said “don’t worry, he is fine”…For years the school told me he try’s hard, not everyone is an academic, don’t worry he will do something with his hand. Finally in year 9 at school his wonderful teacher, who has had much experience with Austistic children picked it up..It was such a relief to know that my instincts were right, finally after 14 years i was given a diagnosis…what a blessing it was knowing that someone cared and took notice of my son and led us in the right direction. Off to my first Austism Workshop tommorow, i can’t wait!

My husband and I were just provided a Dx for our son last week…. well officially Dx. Our son has had significant medical issues since he was before he was even born. I know that sounds crazy, but he stoped growing and he was 3 weeks behind is growth by week 20 of my pregnancy and by week 31 he was 6 weeks behind in growth. At 31 weeks he came into this world at a huge one pound nine ounces. So, we quickly became very accustomed to the medical world. I worried if anyone would be “home” in his little body. He was about 6 mounths old when I first heard a laugh and I kniew he was there. It was the best expeirence that I have ever had. We are still working with genetics but at least we now have a tool, a Dx, to describe my son’s commuication difficulties, lack of social interest, and odd behaviors. He has never been typical and has been recieving therapy since he was 6 months old. He has even participated in Kennedy Krieger Institute’s program for feeding disorders as well as Central Kentucky’s Riding for Hope Hippotherapy program. This winter we decided to look into the possibility of the Autism Dx (actually it was nice to be able to worry about these things instead of just his physical medical needs), so we took our son to Cincinnati Children’s Hospital to be evaluated for Autism. After several appointments they confirmed that he is not only of the spectrum but that it was autism. I think the doctors were surprised that I wasn’t upset be the Dx. But I explained to them that I had decided somewhere between his first laugh and the offical Dx that my son was on his own unique path in life. He has survived 1.9 oz birth with 96 days in the NICU, he has survived NEC, he has survived 8 surgeriees. He is a fighter, and he is wonderful. He has gone through a lot more than I think I could handle if it happened to me. Would I like him to be “normal”. Sure. But he is beautiful and he has makes me grow as a person. The Dx does not change my son, it changes my ability to describe what is going on with him and provides access to additional services. We are still going through the process to evaluate the most appropriate services for my son, so life with my son will always be a journey.

My son Nathan is 9. We have been treating him for ADHD. We moved and his new doctors want a psych evaluation to determine what is really going on. He is highly intelligetn with reading and music. he is socially way behind. Does not know when to be quiet or not to touch others. When something does not go his way he throws fits and tantrums. Trying hard to understand all of this. We think he has at least Asperger’s probably more. Hope we can find a diagnosis that will help.

My daughter was eight years old before she was properly diagnosed. However, there were signs of Autism much earlier. unfortunately 12 years ago, I did not know as much about Autism as I do now so I did not recognize the signs or dismissed them since they did not fit what little I knew about Autism. First of all, my daughter did not like loud noises and would hold her ears and run screaming from the room. She was very selective about when and by whom she could be hugged or touched and would say ‘don’t touch me? when she did not want to be touched. These two things made me think Autism but at the time I thought all children with Autism were non-verbal and sat and rocked or banged their heads all day and this was not my child so I dismissed it. She is also gifted academically… She was reading at a VERY early age and would fixate for hours on toys or projects. Once, when she was three, she arranged all of her legos by size, shape and color in these complex and perfectly symmetrical geometric designs…. When she started school, she did not have the social skills to get along, she would tantrum and meltdown and would be aggressive too. A friend of mine was talking about HER child who had just been diagnosed with Aspergers and she noted the similarities between her child and mine. So, I went BACK to the doctors who had been trying to diagnose my child (trying to MAKE the diagnosis fit -square peg in a round hole) and we talked about Autism and Asperger’s and FINALLY got the proper diagnosis when she was 8.

There was a part of me that was devastated by the diagnosis mostly because I did not know a lot about it but a BIGGER part of me was relieved since we finally had a NAME for what was going on with my daughter. Now I could research it and we could make a plan to help her… Fast forward 7 years.. she is now 15… She is active in Girl Scouts and Youth Group activities. She successfully completed her first year of high school in a small charter school and she was a cheerleader and in Drama club at school. The journey has not been smooth..we have had bumps and detours along the way but she is a beautiful and intelligent young lady. While I would not wish our lives on anyone else, I would not CHANGE one thing about our lives either. I am a better human being because of my daughter. She inspired me to return to school and get a Master’s Degree in Special Education. I am also taking courses to get certified in teaching Autistic Children as well.

These children are capable and bright and we just have to do all we can to help them unlock the potential that exists in each one of them.

It took me years to get my son diagnosed. He did start receiving things like birth to three when he was a year old, but we didnt know what was wrong with him. We even took him to our states best childrens hospital and they didnt nail it. We put him in integrated preschool, found a behavior specialist and a psychologist whom together, working with him for months gave the following, Aspergers, ADHD, ODD, and Sensory. so now he is four going in K next year with alot of accommodations, and alot of hard work ahead of us. WE did find that putting him in a marital arts class made a huge difference with focus and discipline, It has been three months since he started, and he is doing great. But i think he needs more in home services,but our insurance doesnt cover it, and we cant afford it. Aint that the way it goes.

My 6 year old son Malachi began saying moma and dad-dad at 7 months, then one day it call stopped. He wasn’t saying anything and wouldn’t give you any eye contact what so ever, family members told me there was nothing wrong with him but as a parent I had that deep down gut feeling that something was wrong. As he went into his 1st birthday he still wasn’t talking or playing with any of his toys, he found more entertainment in his hands than anything else. I spoke to a parent program council about it and they helped me have him tested for Autisum. Once I received his diagnosis when he was 2 I sat in the car and I cried. But I was relieved because now I had something to start with to help him. He immediately started occupational and speech therapy and then went into special classes that upcomming fall. At the age of 4 he started talking and getting into other things as far as toys and books (olivia is his favorite) and interacting in conversations. and now he is entering into the first grade. He is so excited (he usually doesn’t get excited), Praise god for that.

We participated in a study at the University of Michigan, in which it was determined our boy met the criteria for ASD. We were relieved to have some explaination for the challenges we face. Unfortunately his Kindergarten refused to accept the diagnosis, blew up his IEP and said he doesn’t even meet criteria for ECDD let alone ASD. I was informed that “ASD is a medical diagnosis, not an educational one. It isn’t manifesting itself in the classroom”

The fight with the school is frustrating. The educators need to be educated about ASD and how it impacts the child. ASD impacts the way all stimuli are processed and the way he interprets all things regardless of if he’s “acting out” or not.

When my son was born, I noticed he was different…so alert. He was a good natured baby and then the week before his third birthday he changed. He was “active”, “hyper” and got into everything and seem to laugh about it. He took a million times to learn a rule such as to stay out of the road, something my other children all learned in 1 – 3 times. I thought he may have adhd. He was smart. When he was 7 I took him to an adhd doc who said he had it and put him on adderall. He didn’t sleep for 3 days. They uped his dose, and he slept, but he cried ALL the time. That was enough of that. A nurse psychiatrist put him on intunnive. Side effect is tiredness. Nope. Nothing changed. Was like he was on nothing. He sees a speech therapist and an o.t. (for sensory processing issues) a counselor, dr.s & psychologists. They keep mentioning pervasive development, aspergers, etc. On paper he is perfect autism, but sitting with him in person he isn’t” was what one psychologist said. He wants to have friends and has an extremely large vocab. so know one knows what he has. Now they are bringing up PDD or Mood disorder, both NOS. What the heck. The reason I began looking for answers is because nobody can handle being with this child for extended periods of time. Something is not right. He just turned 8 and right before that he cut his own hair…it is like having a perpetual three year old some times! Our insurance does not cover autism testing, so we are “waiting” for county help. Even with county help, you have to pay a premium and I don’t know if we will be able to afford it? It is all so frustrating. I am with my son 24/7 and without a proper diagnosis I don’t know what to do to help him. Or how to deal with the emotional aspects of being a parent of a special needs kid.

I was finally diagnosed in my early 20’s.After I graduated from high school,i was terrified about going out into the adult world.while it is an exciting time for most people,graduating,and going off to college,I was scared and uneasy.Even now,I am amazed that all of my peers went off to college,got married,and many have had children.It came so naturally for them. One of my childhood friends is now expecting her seventh child.I am 36 and still living with my parents.I havent learned to drive,but I attend a day program with others who have disabilities.Not just autism,a variety of disabilities.I have only had one boyfriend.He has autism as well,but he doesnt talk in conversation.He only asks repetitive questions.i was uncomfortable with that,so i told him I only wanted to be friends.he took it pretty hard at first.i felt so bad about hurting him,but I need a man who can take care of me.I am glad that now i have gotten the help I need.

So many people have asked me, “How did you know?” This questions has always been a tough one to answer because there were so many little signs. Just this past week I started writing about just that question, “How did I know?” I just posted it a few days ago. So I think the post expresses how I knew and how I felt. I think it also shows how I see the future.